Invisible squared | Diabetogenic

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There are moments when someone says something so illuminating that it sticks with me and I turn their words over and over and each time, those words hit home deeper and deeper.

That’s how I’ve been since last week, when Victor Montori, during his talk at the Nossal Institute for Global Health’s Compassion, Care, Complexity & Culture webinar said: ‘The work of being a patient is invisible‘. He went on to talk about just some of what is required of people living with health conditions. Of course, Victor is spot on! There is nothing simple about needing to navigate complex health settings and systems, yet most of our work to make it all make sense is not seen or recognised.

As soon as he said it, I realised that those of us with diabetes are hit with a double whammy. Not only is the work we do invisible, but so is our health condition. We don’t ‘look sick’. There is often very little to point to our diabetes and how it can challenge, frustrate, exhaust us. I frequently talk about what it takes to ‘do diabetes’ – the arduous, momentous, all encompassing tasks that it relentlessly demands of us. But how many people actually see that? Diabetes isn’t alone here; there are certainly other invisible conditions.

We need to exist and function within health systems that sometimes feel as thought they are working against us and as health becomes more and more corporatised, our frustrations grow. Perhaps it’s just me, but with every mission statement and strategic plan that promises to do better by people (with diabetes or whatever), all I seem to see is less recognition of what real life for us is like. My consulting side hustle often has me being asked to review these documents, and the question I ask most is ‘And what does this mean exactly for the people you are meant to be serving? How exactly are you going to reduce the burden?’ (or whatever it is that they have promised to do). In most cases they can’t answer and furthermore, there is a genuine lack of understanding of what that burden is.

Is making the work of being a ‘patient’ more visible to more people what is required to systems to change? I know that in the case of diabetes, it is those health professionals who recognise what we do to make our invisible condition tick are the ones who are often more generous in their dealings with us. My endocrinologist has frequently acknowledged just how much there is to do with diabetes, how hard it is, and understands that no one really wants to have to do it. She’s right. On all counts. But I wonder how she knows that when so many others simply don’t.

We regularly hear about how overworked healthcare professionals are and how our under-resourced health systems are working to capacity and I don’t for a moment doubt any of that. But you know who else is working to capacity? Those of us living with health conditions. But for us, looking after our health is a burden on top of ‘every day life’. It’s a job on top of our jobs. It’s just that we do it all hidden from plain sight.

The only way that the work we do will become visible is if we talk about it, and work to quantify it. Justin Walker’s comment at the DData event back in 2018 went some way to doing that when he said ‘By wearing OpenAPS, I save myself about an hour a day not doing diabetes‘. I can’t tell you the number of times I have quoted this because it shows two things: firstly, just how effective Open Source AID (and perhaps commercial systems too) can be at reducing the burden of diabetes tasks, and secondly, to highlight how much time those tasks take. Getting back an hour of my day, each day, has been brilliant. But there are still minutes lost every day to diabetes. And what we do during those minutes is largely unseen. It’s the invisible work Victor spoke of.

The invisible work extends to the hoops we need to jump through simply to exist. I hear from friends in the US the hours and hours of work they need to do to sort through health insurance issues. This week, I’ve spent hours upon hours of my time trying to navigate VicRoads (the state’s licensing authority) and the decision that, despite no changes to my diabetes, additional medical reports were necessary for me to keep my license. The final outcome was the sensible one – no need for anything further, after all – but it took emails, several phone calls where I was required to explain and explain and explain again, text messages to my endocrinologist, and my own inside-out knowledge of the guidelines before the right outcomes was reached.

I feel that as health system frequent flyers, we have simply come to expect that this is part and parcel of the process and I so appreciated Victor highlight the work, and suggest that the burden that has fallen to us should be remembered. I have thought about it a number of times since the event: after waiting for 45 minutes to see a nurse for a vaccine last week, only to be told the vaccine wasn’t in stock and I’d need to source it (even though I asked if it was available); as I raced between two different pharmacies to collect said vaccine after the one I called first didn’t have it available, despite them promising me they did just ten minutes earlier when I called, while listening to hold music as I waited for 15 minutes so I could speak with someone to reschedule a screening check that had been cancelled for no apparent reason, as I rearranged a meeting so that I could get to the local pathology centre for a fasting blood check (after being sent away the previous afternoon because I wasn’t aware that I needed to fast for that particular check). And while speaking to the third medical reviewer at VicRoads yesterday.

I don’t know anyone who wants to do the invisible work of being ‘a patient’. And yet, I feel that we all know that there isn’t a choice. We accept that the toils of managing diabetes persist, silently and profoundly hidden in the shadows. And feel locked into a contract that expects us to do hours and hours of work apparent to no one. Invisible, perhaps. But real? Absolutely.

Cartoon of doctor's weighting room. There is a person at the counter being handed a clipboard. The caption is 'Please fill out these medical forms which are identical to the ones you filled out earlier online and have the exact same questions the doctor will ask you later in the exam room'.
I saw this cartoon from the New Yorker today and it hit home with its relevance to how I’ve been feeling lately. It’s by Lynn I. Hsu. Click for details.



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